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Frank

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  1. Ramakentish, My wife also has the over stimulation problem. She can no longer drive safely and sometimes even the TV is too much for her. She has the same experience the others have in stores. She finds it helps when she knows exactly what she wants and where it is so she can try to ignore everything else, like wearing blinders. She always wears sun glasses when she goes out because the light bothers her eyes and to cut down on stimulation. She always wears ear plugs because even normal sounds are to loud. Too much noise and she gets sick. I wish you well. Frank
  2. Dayna, My wife saw the neurologist who put her through blood testing and autonomic testing. Revealing she had Dysautonomia including orthostatic intolerance. The neurologist referred her to the cardiologist, pulmanary specialist, pain managenent specialist, and gastroenterologist. It won't surprise me if she sees an endocrinologist. Frank
  3. Katherine While it's probably unrelated to her Dysautonomia, my wife's head and face are very sensitive to touch, e.g. she cannot comb or brush the top of her head. Frank
  4. Linda, I spoke with Linda Smith of the NDRF (651-267-0525) and found her very informative and personable. I think she could provide you with a greater perspective and answer some of your questions. Frank
  5. Linda, I don't know the details of your condition, but you might ask the doctor if you could have Dysautonomia. Compare the Dysautonomia symptoms to what you have. Did they do other autonomic testing which could identify what you have or at least what you don't have. Have they done a complete blood work-up. Best of luck. Frank
  6. Amy, It's a consistent problem which gets worse the more she talks or the more she exerts herself. We've had good experience with Froedert. Dr. Peltier my wife's neurologist, is very thorough. We'll see some other Froedert docs over the next few months (cardiologist, gastroenterologist, PCP, pain management specialist). Frank
  7. Geneva, My wife, Christine, has scalp pain, pins and needles, and pressure. The neurologoist who saw her recently described it as a Post Traumatic Neuralgia. I had read up on Post Occipiatal Neuralgia, but discounted it as she had no pain behind her eye. The pain management specialist put her on Topamax to see if it will calm down some of the nerves. We'll have a better idea in a month if it's helping. Frank
  8. Dear blackwolf, morgan617, and LindaJoy, I really appreciate your sharing your personal experiences. They set my mind a little more at ease to know that she won't ever stop breathing because of this. Christine and I will see the pulmonary specialist at Froedert Hospital which is a teaching hospital on April 22nd. I'll let you all know how it goes. Frank
  9. Hello Everyone, My wife, Christine, is worried since breathing is becoming more of an issue for her and because she feels burning in her chest. Her Echocardiogram though came back normal. It tore at my heart last week to see her struggle for a minute or two to get some air. She couldn't even talk, and she had this panicked/distressed look. She didn't pass out or turn blue, but that was small comfort. Does anyone have experience with sort of thing and what can be done about it? My wife is loquacious, but now she often has me speak on the phone for her. Frank
  10. Tearose, I always welcome suggestions that can help my wife. I'll try to go through some of the old posts. I picked up a book from the National Dysautonomia Research Foundation which helped provide a foundation for understanding Dysautonnomias: The NDRF Handbook For Patients with Dysautonomias by Dr. David Goldstein and Linda Smith, ISBN 0-913848-06-9. Thank you for your thoughtful welcome. Frank
  11. Merrill, Thank you for your suggestion. So far insurance has posed no problem, but unfortunately Christine is hypersensitive to touch so she doesn't wear anything tight. Hopefully we'll find something else. Frank
  12. Geneva, Christine is a wonderful and a spiritual person, but she is still in the denial phase. She looked forward to doing so much for her husband and daughter. This July is our third wedding anniversary, and this May is Ellie's (short for Eliana) second birthday party. Christine is planning it as if it were a miniature first birthday party since she collapsed just before the cutting of the cake last year. What did the doctors say about all your symptoms since POTS cannot account for all of them? The doctors at Froederdt Hospital's Pain Management Clinic recommended Topamax for her head pai
  13. Morgan, Christine's condition has only brought us closer, but I wish the Good Lord had instead presented us with the opportunity of living in Tahiti on an unlimited expense account. We live in Wisconsin and drive to Milwaukee to see Dr. Wendy Peltier, a neurologist with a subspecialty or at least a real interest in Dysautonomia. Dr. Peltier works at the Medical College of Wisconsin and does clinical work at Froedtert Hospital (in the same complex of buildings). Froedtert also has the ability to conduct autonomic testing. Just today Christine told me she is not ready to talk about doctors
  14. Linda, Christine already had many of the different autonomic tests including the tilt table at the Medical College of Wisconsin. Dr. Peltier called her to let Christine know she has Dysautonomia. Tomorrow we discuss the test results and a treatment plan with the doctor. From what I can tell by looking at her symptoms, both the sympathetic and parasympathetic systems are involved. On her own Christine decide to go back to her habit of eating like a bunny (my description). She's cutting back on carbs and sugar, and going for the vegetables and fruit. Not only that, but a year ago I introduc
  15. Dawn, We also live in Wisconsin although my wife grew up in Chicago. She has the symptoms of fibromyalgia. In fact for about 10 years that was their diagnosis. Funny you mention driving. She is thinking of driving at night when there is less sensory stimulus. She cannot use the stockings because touch is painful. Have you ever tried Emetrol for nausea? My wife takes Tamezapan to help her sleep. She sleeps a lot better, but she dreams constantly. How is Klonopin in that respect? Christine loves kids. She worked a short time as a teacher's aide when she was unable to finish college because
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